Care recipient self-perceived burden: Perspectives of individuals with chronic health conditions or personal experiences with caregiving on caregiver burden in the US

Abstract

IntroductionSelf-perceived burden refers to the perceived impact of a care recipients’ illness and care needs on their caregiver(s). This study aimed to: 1) examine the components of caregiver burden from a perspective of people with chronic health conditions, 2) explore the extent to which people consider caregiver burden important in their healthcare decision-making, and 3) develop a global item to capture the essential elements of self-perceived burden. MethodsSemi-structured interviews using cognitive debriefing were conducted with US-based individuals with chronic conditions, informal caregivers and social care users between October and December 2018. Components of caregiver burden were organized within a concept analysis framework. The preferred wording for a global self-perceived burden item was explored for face and content validity using five candidate items. Interviews were transcribed verbatim and analyzed using thematic analysis. ResultsTotal of 19 participants, aged 23–76, completed the interviews. Study identified three main antecedents of caregiver burden: caregiving situation, financial resources, and sociocultural environment. Attributes included physical, emotional, financial, and social aspects. Consequences were financial hardship and decreased health-related quality of life. Most participants distinguished “burden” from related concepts such as “bother” and “stress”. “I feel like a burden to my family/friends” with a severity response option scale, was perceived to broadly encompass the construct. ConclusionSelf-perceived burden was identified as a highly relevant concept in healthcare decision-making for US participants. A global self-perceived burden item can provide a valuable summary measure to inform medical decision-making and potentially capture spillover effects of patient care on family and caregivers.